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Newly diagnosed and confused over treatment for lichen sclerosus
Autoimmune Diseases | Last Active: Feb 11 3:07pm | Replies (141)Comment receiving replies
@joybringer1
I know this thread is old but hoping for more help with LS. I am under a dermatologist care since 11/25. Going back for follow up in February. Treating me with clobetesol. Itching & inflammation is under control but have a rash or sore on the inside of vulvar that I guess is not responding to clobetasol. It burns when urine hits it. Us this part of LS & how long before it goes away?
Replies to "@joybringer1 I know this thread is old but hoping for more help with LS. I am..."
@andwho, I wish I could help you. I use Clobetasol twice weekly. I have red spots and my gyn told me they were broken blood vessels. I did have surgery a few yers ago to remove pre-cancerous lesions. I am not saying this is what is wrong with you, but I think you should ask your doctor for an appointment sooner than later. LS is miserable and you have a rash/sore that is a worry. Please let us know what your doctor says. This might help someone else who has a similar problem. I use a compounding numbing cream because I burn constantly. My gyn thinks I have nerve pain and I think that is correct. I take 50 mg of Amitriptyline at night. With all good wishes, @joybringer1.
@andwho
You are not alone in your LS diagnosis. I was diagnosed at age 48 (now I’m 65) and used Clobetasol until I was 64, with very little relief. I had an LS laser treatment in Phoenix that didn’t help AT ALL. I had three laser treatments in Pensacola, FL at Coyle Institute that were very helpful, a couple years apart. But the LS always comes back eventually, and is thought to be an autoimmune disorder. Dr Michael Coyle had me completely quit using steroid ointment last February, instead using OZONATED COCONUT OIL a couple times each day (I buy from Pur online) and for the first time in years, I’ve had no further lesions. I do have itching off and on, but it’s tolerable.
For the lesion that absolutely won’t go away, SSD cream helps me. A lesion usually heals after one or two applications. (Silver SulfaDiazine.) This isn’t something normally prescribed for LS, but is for burns, that quickly helps with healing the skin.
I hope you find relief. This is a great forum to belong to for LS sufferers.
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@andwho - Just looking here at your most recent post, PLEASE seek out a gynecologist.
I do see a dermatologist for other skin issues, but in my 40+ years of staying on top of Lichen Sclerosus (LS) I have only found that my gynecologists were the medical professionals versed in the latest developments on LS. And, just for perspective, I have lived in at least 5 different states throughout my careers; what that means is, I could have run into quite a variety of gynecologists and expertise, but fortunately I always had consistent guidance that (as far as I could determine) was up to date on LS, and could recognize abnormalities and do a biopsy when there was any Q of concern.
I hope seeing a gynecologist is possible for you, and that you find one that you respect and are comfortable with.